If you know of any media coverage not listed already please use the online mail form on the 'Contact us' page to let us know so we can keep this page updated.
February 2014 - Worcester News, England,UK
Kidderminster mother calls for Rare Disease Day support
July 2013 - Leicester, England, UK
The little boy with a place in medical history
May 2013 - Somerset, England, UK
Seven year old with rare illness in charity bid